Change of meds

Hello

I had a THYROIDECTOMY 10 years ago...I recently saw my Oncologist and told her how exhausted I am after work...I have recently been over educated and my Levo reduced to 75mcg...she suggested taking 100 mcg Monday, Wednesday and Fridays...today I feel rubbish again...am tempted to go back to 75mcg...when I was on 125 mcg I had Palps and was very ill. I don't wish to go down that route ever again. Thank you. (Should have read medicated not educated!)

10 Replies

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  • Sesbo, can you post your recent thyroid blood results with the lab ref ranges (the figures in brackets after your results) as it will help members advise. Thyroidless patients don't always convert sufficient T3 as over 20% of T3 is produced in the thyroid and if you can't tolerate more than 75mcg T4 you may benefit from adding some T3.

    Ask your GP to test ferritin, vitamin D, B12 and folate as hypothyroid patients are often deficient/low and these deficiencies can cause musculoskeletal pain, fatigue and low mood similar to hypothyroid symptoms. Post your results with the lab ref ranges (the figures in brackets after your results) in a new question and members will advise whether supplementation is required.

  • Hi sesbo.

    Your question isn't unusual. Can you get a print-out of your blood test results, with the ranges which makes it easier to comment. We are told we are overmedicated when the TSH is under a certain level, but that's not the case always. Some of us need a very low or suppressed TSH and it looks as if that's not your case if you have clinical symptoms.

    I have hypothyroidism but my personal opinion is that people who have had a thyroidectomy should give given more than the basic levothyroxine. After all they have removed your thyroid gland and substitued one hormone, T4 hoping it would convert to sufficient T3 (the active hormone without which we cannot live).

    Why they cannot either give you T4/T3 or NDT (which some doctors rarely prescribe). natural dessicated thyroid hormones (NDT) contain everything our normal gland would have produced, T4, T3, T2, T1 and calcitonin and because it's not synthetic may be more synergistic with our human bodies.

    I was always unwell on levo but now am on T3 alone and feel well.

    Post the results of your most recent blood tests, with the ranges,onto a new question for comments.

    If your doctor hasn't tested your B12, Vit D, iron, ferritin and folate ask for these to be done as we are usually deficient.

    We have to read and learn so that eventually we know more than the medical profession. As the many thousands who are undertreated/unmedicated have to find the remedy for themselves to recover their health as the solution can vary between each person.

    The biggest problem is the attitude that we can be diagnosed according to the TSH which is not reliable at all (unfortunately the Endocrinogists seem unaware of this fact).

  • Hi thank you...I had to have a private blood test done as you know nhs won't.. This is in August after I had my dose reduced from 125mcg to 75mcg as I was very ill...palpitations and felt very ill...although I felt better with 75mcg I am struggling at work and feeling very ill. T4 11.4 (15.3). T3 3.9 (4.5) TSH 0.10. The oncologist I saw in November recommended 100mcg Mondays, Wednesday's, Fridays...I would like to try natural hormone replacement but am wary because of cost..many thanks

  • It's no surprise you are struggling at work. To reduce your dose from 125 to 75 in one fell swoop is ignorance. It's too much of a reduction all in one go. Whoever is treating you doesn't know much about thyroid hormones. Too large or Too small a dose isn't good for us. Everything has to be gradual. No wonder you felt so unwell. It would really destroy your confidence in whoever is treating you.

    Some patients don't feel at all well on levothyroxine. I am one and never had a thyroidectomy so goodness how you felt.

    If you email louise.warvill@thyroiduk.org and ask for a copy of the Pulse article and discuss Question 6 with your doctor and ask for a trial of 10mcg of T3 to your 75mcg levo. (I don't think you need to reduce 75mcg as it is too low. If you had still been on 125mcg you would have had to reduce by 50mcg levo and add 10mcg of T3. Forget cost, it's not our fault we cannot improve on levo, so it's the least they can do.

    You have to fight your corner (I don't mean to box with the doctor :) ) otherwise you will not improve. The more I reduced levo and increased T3 the better I became.

  • Hello..thank you so much!!!! I will e mail louise...and make appointment!!!! I am also looking into NDT as some do well on this...but sourcing it without a prescription seems difficult. The reduction in dosage was because I was so poorly...both private Endo and GP recommended this although oncologist thought it was quite a drop...am wondering now as I am on 100mcg Monday, Wednesday and Fridays if that's why I am starting to feel lousy again!

  • I am not an expert but having had the same op 13 years ago I know that 75mg would be no good for me at all, just not enough. I take alternate 100 and 125 which seems to be about ok. Perhaps as has been mentioned you need some T3. People on here will help if you can post your blood work.

  • Hi

    Many thanks..have posted bloods on a previous post...the oncologist never suggests extra T3.. I guess because of cost?? Having been over medicated recently to the point of not being able to work I am ver wary of trying combinations of T4 T3.. In case of getting ill...I have had s much time of work as doctors didn't check my bloods properly and I had to good private...I also paid for my bloods..then it was discovered I was off the scale..am generally better on 75mcg but some days am struggling at work..I do just 6 HR shifts in a care home but am exhausted at the end and just want to go to bed!!!

  • I don't think many doctors are aware of the benefit to us of T3 or some T3. It's because they have been brainwashed that levothyroxine is the 'be all and end all' by the big pharmaceutical companies push to up their profits who also fund thyroid organisations and in the USA doctors are paid in kind for prescribing different medications.

    Now, levothyroxine does work for many, but its the ones on this forum and around the world who don't get well or even feel worse and alternatives are denied them. I had never-ending palpitations on levo which subsided when T3 was added. Of course, everyone is different and what suits one doesn't always suit another.

    hormonerestoration.com/Thyr...

  • Hello Sesbo, I too had a thyroidectomy (cancer) 10 years ago and was put on Levothyroxine. After a long slog I am at last feeling better I take 60 mcg of T3 daily. (I weigh 9st and am 5'4"., incase this has any relevance). Sounds to me that you are not medicated sufficiently and as Clutter said, without a thyroid we often don't convert T4 to T3.

    I hope you find a decent Endocrinologist who will help you feel better.

  • Thank you so much...am pleased you are doing well...I think it's all going pear shaped as I am approaching menopause etc... I had to go private to see an endo who was very good but I cannot afford to go again..I think I need to go to the doctor and ask about T3!!! I wish there was a lot more understanding from doctors about what we are all going through. Thank you again.

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